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How to keep this disase from defining us?

mom2greatkids's picture
mom2greatkids
Posts: 511
Joined: Jun 2011

I am really struggling with discouragement and feeling hopeless. After my 9 month remission, I'm back in chemo for a recurrence in a lymph node near my left collar bone. (As I posted earlier having a tough time with taxol/cistplatin).

I now have my teaching license (at age 50), but could not find a job because of my health. I will be able to substitute teach as I feel like it.

Since my husband's death in '10 I want to get out on my own. I've been with my sister and her family for over 2 yrs. It's like there's no "light at the end of the tunnel."

How can I keep this disease from defining me? It's like I have to deal with it constantly because of dr. appointments, etc.

I have applied for disability. Hopefully that won't be a battle. I have spoken with an attorney in case I am turned down. I was told that when I turned 50 I could draw widow's disability from my husband's S.S. I haven't worked outside the home in 25 yrs. (and yes I loved being a stay at home mom) Our plans were always for me to return to work when the kids were grown.

Any suggestions? After Cistplatin I don't feel like doing anything for a while. People just don't understand how brutal this chemo is.

Thanks Ladies,

Carla

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

to keep from being defined by this disease. I don't like to talk about it much (except here) and I hardly ever say the word; cancer. I hate the word. But having said that it is on my mind all the time. It's just there.

I lost the man I spent 27 years with to a heart attack in 2007. A couple of years after he passed, a friend asked me how often I thought of him. I said he is on my mind all the time. She was surprised and said, I thought maybe you just thought about him once in a while. I said it's the same way you think about your kids or friends or job. It isn't always a concrete thought but it is there. I don't know if I explain that well.

That's how I feel about the monster. It's always there but it's not like I'm crying about it. It is a fact of my life. I just try to keep it in perspective and not let it have front and center. Sometimes it comes forward like today when I had the blood test for my latest CA 125. Now I will have to wait for the results and that will be on my mind.

I think once you feel better from the chemo you will see things differently. It took me the better part of a year to get rid of the aches and pains from treatment but I felt good otherwise. I still feel good now even though I have a tumor. But it is almost like the tumor isn't there because I have no symptoms. I want to make the most of times like this. I acknowledge feeling good and being alive each day. I am grateful to have this day. With recurrent ovarian cancer I know the future will bring difficult times but if I worry about that I won't really enjoy today.

As for the social security disability. I have told my story here before. I was old enough for social security so that is what I applied for. The SS worker applied for SS disability for me. I didn't think I would get it because my doctors said I could return to work if I wanted to. A couple of people told me; you'll get it but I didn't see how. I was approved. Then I found that there is a list you can find on the social security website that lists the conditions that "automatically qualify" someone. Ovarian cancer is on that list.

Sorry to ramble. It's sometimes hard to put all my feelings into words.

Karen

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

It can be a vicious circle...if you let it. You are trying to learn to swim by jumping into the deep end of the pool! Start out small. What is it YOU want to do MOST(besides NOT have cancer?)When you are treating this illness,you have to take care of that first, then go after what you want most. Don't just say "Well, I need to do this, or I HAVE to do this". Really sit down and have a serious talk with yourself, then treat this cancer, then go after what you WANT. The rest will fall into place. I really had a hard time after the loss of an infant son. No advice, no group talks, no support, just me. Had to learn really fast to get out of that black hole or I was going to die there. Give yourself some time...you are one person who can't go full-tilt any more. You will be fine and will be NED again! Best, Debrajo

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

It can be a vicious circle...if you let it. You are trying to learn to swim by jumping into the deep end of the pool! Start out small. What is it YOU want to do MOST(besides NOT have cancer?)When you are treating this illness,you have to take care of that first, then go after what you want most. Don't just say "Well, I need to do this, or I HAVE to do this". Really sit down and have a serious talk with yourself, then treat this cancer, then go after what you WANT. The rest will fall into place. I really had a hard time after the loss of an infant son. No advice, no group talks, no support, just me. Had to learn really fast to get out of that black hole or I was going to die there. Give yourself some time...you are one person who can't go full-tilt any more. You will be fine and will be NED again! Best, Debrajo

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

It can be a vicious circle...if you let it. You are trying to learn to swim by jumping into the deep end of the pool! Start out small. What is it YOU want to do MOST(besides NOT have cancer?)When you are treating this illness,you have to take care of that first, then go after what you want most. Don't just say "Well, I need to do this, or I HAVE to do this". Really sit down and have a serious talk with yourself, then treat this cancer, then go after what you WANT. The rest will fall into place. I really had a hard time after the loss of an infant son. No advice, no group talks, no support, just me. Had to learn really fast to get out of that black hole or I was going to die there. Give yourself some time...you are one person who can't go full-tilt any more. You will be fine and will be NED again! Best, Debrajo

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

It can be a vicious circle...if you let it. You are trying to learn to swim by jumping into the deep end of the pool! Start out small. What is it YOU want to do MOST(besides NOT have cancer?)When you are treating this illness,you have to take care of that first, then go after what you want most. Don't just say "Well, I need to do this, or I HAVE to do this". Really sit down and have a serious talk with yourself, then treat this cancer, then go after what you WANT. The rest will fall into place. I really had a hard time after the loss of an infant son. No advice, no group talks, no support, just me. Had to learn really fast to get out of that black hole or I was going to die there. Give yourself some time...you are one person who can't go full-tilt any more. You will be fine and will be NED again! Best, Debrajo

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

Carla - I agree with what all the ladies said. Karen is right that it is always going to be there but we need to put it in the back of our mind instead of right out front. Being new to NED since the end of July I have little breakdowns where I feel like I am back.. I talked to my doc aebout it last Friday. She told me the dull stomach pains I get or back ache or the gas I get once in a while for a day or two are all part of my body healing from surgery and chemo (especially since I had the I P chemo). Unfortunately they are all also signs of a recurrence. She told me she wants me to live my life like I did prior to cancer and know that it is different now becase she is keeping a close on me. She said her job is to do the work mine is to enjoy life and let her know if I feel something arises. All of my healing symptoms come and go. She said she needs to know when they persist.

I work very hard on not making Cancer the main focus of my life. It is togh. I guess you could say I fight NED like I did cancer. I fight it with the "I can do this attitude". I know it could conme back. I have excepted it. But I refuse to count the minutes till it does.

ConnieSW's picture
ConnieSW
Posts: 536
Joined: Jun 2012

Glad, I am going to copy your remark about accepting the fact that cancer may come back but not counting the minutes till it does. Inspiring. Thankyou.

2timothy1 7's picture
2timothy1 7
Posts: 329
Joined: Jan 2012

Cisplatin is tough stuff! It made me feel so weak during the last two rounds especially. I was too weak to even shower for 2-3 days when it took hold. All I kept saying to myself is " I will feel better tomorrow". I had to make myself focus on something positive. When we dont feel good it is easy to get down.
You will feel normal again. Normal and NED!

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

Cisplatin sucks.... Since this was my first go around with OC I don't know what any of the other chemos are like but I do know I never want to have to do that again... It is some strong stuff with some nasty side effects but I thank god every day now that she chose the big guns first time outta the gate. It got me NED and for that I will always be greatful to cisplatin.....

kimberly sue 63's picture
kimberly sue 63
Posts: 389
Joined: Apr 2012

I am also feeling somewhat down about where I am at. I have had fifteen chemos. Three more to go!! I'm ready to be done....but I do have this new fear. In some sense chemo has developed into a security blanket. I did think it ever would especially with starting and all the side effects especially the hair loss. But now that I'm coming to an end, I feel fear again. I am at that "what if" stage. I felt safe in chemo even with low blood counts because it meant the disease was at bay and being controlled. Now it will soon be over, and the fear of a possible reoccurance is overwhelming some times. I know....positive thinking....live life like the best you can....don't worry about your future....Easier said than done some times. I suppose it is a new normal that I have to deal with. On top of that, my genetic testing came out to be BRCA 1.... so what is that suppose to mean with already dealing with cancer once. Also the fear one of my four daughters will be positive for the gene and have my same path or worse. Some days it is easier to be positive than others. Kim

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